Disease affects 300,000 Americans, including some in West Michigan

WASHINGTON – To help find better treatments and a cure for the debilitating disease Scleroderma, Congressman Vernon J. Ehlers today introduced the Scleroderma Research and Awareness Act (H.R. 2408). Scleroderma is a chronic and disabling connective tissue disorder resulting from an overproduction of collagen. There is currently no known cause or cure. Ehlers introduced the bill with Rep. Lois Capps (D-CA).

      The bill introduced today directs the National Institutes of Health to expand research related to scleroderma, and authorizes $60 million through 2012 to research the disease, develop new treatments, and create family and “child-onset” patient registries. It also authorizes $2.5 million each year through 2012 for a public awareness campaign. Funding in the bill must be approved by Congressional appropriators.

      “Scleroderma affects hundreds of thousands of people in the United States, and we still do not know what causes this terrible disease,” said Congressman Ehlers. “By creating new federal funding for research into this disease, we can improve our understanding of this sickness and come up with better treatments, and perhaps even a cure. Despite its impact, scleroderma only gets a small share of federal research dollars. This bill will greatly increase that share, and should lead to breakthroughs that will help individuals affected by this disease.”

            Congresswoman Lois Capps (D-CA) introduced the bill with Ehlers today. “Scleroderma is a devastating disease that impacts hundreds of thousands of our friends and neighbors,” said Congresswoman Capps.  “Despite its prevalence we still do not have an adequate understanding of this disease and how to treat it. It is absolutely critical that we expand federal funding for research on the disease so we can learn more about what causes scleroderma, how we can better treat it, and hopefully find a cure.  I’m pleased to be introducing this bill with my colleagues to encourage this essential research which we hope will greatly improve the lives of those suffering with scleroderma and their families.”

      Scleroderma disproportionately affects women and minorities. Women account for 80 percent of all diagnoses, including Grand Rapids, MI resident Roseanne Coty. “I feel passing this bill will provide the funding so desperately needed by patients afflicted by this disease,” said Coty. “My greatest hope is that this bill will generate enough research and technology to ease the suffering, develop new treatments, and eventually, eradicate Scleroderma for all those afflicted."

      The bill has the support of many in the medical community, including Dr. Richard Martin, Professor of Medicine, Rheumatology at Michigan State University’s College of Human Medicine in Grand Rapids.

      “It is an important affirmation of the merit to the Scleroderma Awareness bill that Dr. Ehlers is committed to championing it in Congress,” said Dr. Martin. “Scleroderma is a devastating illness that can strike women at the prime of life and can cause life threatening scarring of the lungs and other internal organs.  However recent advances the understanding of the scleroderma disease process of have resulted in the first new treatments for what was at one time a hopeless disease. Further progress is dependent on funding of additional laboratory research to uncover the causes of scleroderma and translational clinical research to develop sensible treatment strategies for the optimal use of potentially risky and expensive therapies.”

      The bill introduced today has been referred to the House Committee on Energy & Commerce for consideration.